To someone not in the know, the term pilomyxoid astrocytoma might appear to be the name of a rare celestial object or perhaps a complex chemical compound in a long list of ingredients. "I thought I would never be able to say it," said Kathryn Gehring. "Now it rolls off the tongue."
She can not only pronounce it correctly, she can spell it perfectly and tell you about it in great detail, too. Pilomyxiod astrocytoma is the type of brain tumor Kathryn and Brent Gehring’s daughter Emma, now 6, was diagnosed with at 7 months and has been fighting ever since.
The Gehrings, both educators with Papillion-La Vista Community Schools, met while attending the University of Nebraska at Kearney. Brent is from Creston, a town in Platte County, and Kathryn is from Hildreth in Franklin County. The couple, who now live in Papillion, started their family in 2009 with the arrival of son Aiden. They welcomed their daughter three years later. Within a few months of Emma’s birth, troubling symptoms—strabismus, increasing head circumference disproportionate to her overall growth, atypical motor coordination, low appetite with slow weight gain—began to emerge. An initial diagnosis was Duane syndrome, an eye movement disorder, but additional signs suggested a neurological problem.
"There were these little things that weren’t adding up," Kathryn Gehring said.
"The first MRI request was actually denied by insurance because there wasn’t enough medical reason to do it," Brent Gehring said. That quickly changed, and an MRI in the first days of 2013 revealed a mass that already grown to encompass a third of the baby’s brain.
"We went from when it was just the eye thing and thinking that she’s not going to be able to play basketball or softball, and that seemed so important," Brent Gehring said. "And then we find out it’s this and we’re worried about tomorrow."
Less than two weeks after her diagnosis, the foremost expert on Emma’s condition, Dr. Liliana Goumnerova of Boston Children’s Hospital, performed Emma’s first surgery. A second surgery followed a year and a half later. The tumor’s location precluded 100 percent removal, so ongoing chemotherapy has been needed, to varying degrees of tolerability and success. "There was so much guessing. There were so many unknowns," Kathryn Gehring said.
Emma and one or both of her parents have travelled to Boston more than two dozen times for treatment. She’s had two inpatient stints at Madonna Rehabilitation Hospital for physical and occupational therapy. Other treatment and checkups take place closer to home, including through Children’s Hospital & Medical Center, but a rigorous schedule is still warranted. From figuring out family leave benefits to coordinating childcare for the two Gehring boys (Easton was born in 2016), to having to keep Emma home or separated from her siblings when her immune system is compromised, "It’s hard on you as a family," Kathryn Gehring said, and she means the psychological and emotional impact, too. "I don’t know that it affects Easton yet, but Aiden has seen a lot and experienced a lot that most 8-year-olds haven’t."
"We hear him say things that are very, very real," Brent Gehring said. For instance, he explained, Aiden, who turned 9 in July, chose to research brain tumors for a library activity in second grade. On the other hand, seeing his sister so ill has generated in him a sense of compassion beyond his years.
And there are other bright spots, too, like how friends and family have helped with groceries, meals, housecleaning and child care. Students and colleagues of the couple have also organized multiple fundraisers.
"We just think, ‘How did we do that? How did we make it through that?’ Because we had to, and because we had amazing support. We had a lot of support from a lot of people," Kathryn Gehring said.
The Gehrings started a blog and ultimately a website, emmastrong.com, to keep everyone apprised.
"Initially, one of my driving purposes was that I wanted to be able to write her a story of what she did and what she’d been through," Brent Gehring said.
"It started out with so many calls and texts and everyone wanting to know how she was, and how we were, and what was up," Kathryn Gehring said. "It was easier to write an (online) update and have everybody know. They were doing it because they loved us and cared about us."
The Gehrings now also use emmastrong.com to promote fundraising events and directly raise money for pediatric brain tumor research and awareness, Kathryn Gehring said. "We are motivated to continue to share because maybe it’s going to help someone else."
Currently, Emma is enjoying a respite from treatment, but it will inevitably resume and the larger journey is far from over. Pilomyxoid astrocytomas tend to stop growing once children reach adulthood, around age 21, Brent Gehring explained, and Emma just turned 6. Anything can happen in the next 15 years, and promising research suggests that better treatment options may be ahead.
Looking for answers
Dr. Don Coulter, an associate professor of pediatrics with the University of Nebraska Medical Center who practices with Children’s Hospital & Medical Center and Nebraska Medicine, is a pediatric hematologist and oncologist. He said that although pediatric cancers are a small percentage of all cancers and that Nebraska is a not particularly populous state, statistics show that the pediatric cancer rate here is higher than the national average. For the last five years, Nebraska is tied with New Jersey for the third highest incidence. Those numbers are concerning and need to be examined, Coulter said.
"I want people to understand that statistics inherently are difficult to sort out," he said. Looking back at data going back 24 years, he added, Nebraska still has a higher-than-average rate of childhood cancers but not as high as most recently, so the trend needs to be carefully tracked to see if it continues. Research has already revealed one finding that appears to have held up over time, however: "When we mapped the data, we found that specific counties in different areas of the state do have a higher incidence," Coulter said.
Theories as to why abound, he added, from the effect of chemicals used in local industries to genetic links that emerge in families rooted for many generations in a small community. Once the causes behind the data are identified and better understood, risk factors may be pinpointed and perhaps physicians can make earlier diagnoses or even educate patients on prevention strategies.
"It’s going to take a long time to find those answers out, but in the meantime we have a population that needs help now," Coulter said. "How do we take care of those kids?"
As researchers look for answers, Coulter said, it’s important to consider the immediate implications of serving families in a rural state who may live many hours away from providers with the expertise needed to help their child fight cancer.
"If you live in Bennington, that’s not too bad, but if you live in Grand Island or Scottsbluff, that’s a lot of hours driving and a lot of time that you’re spending," he said. A cancer diagnosis in a child is stressful financially and logistically for any family, but the effects are compounded when care isn’t accessible locally. Plus, he said, the majority of children who recover from cancer experience long-term health effects related to either the original disease or the treatment. Follow-up care may be needed for decades. "There are huge impacts."
Researchers work ceaselessly to find better treatments, not only to continue to improve survival rates, but also to reduce side effects and improve outcomes, Coulter said.
"We still need advocacy. It’s important we raise awareness that this is an issue," Coulter said. "Not just research dollars, but also direct assistance to affected families. Companies can raise awareness and dollars to support that."
Kelly Krings, chief marketing officer (Nebraska) with Northwestern Mutual, said his organization has now made childhood cancer its primary charitable cause.
"I believe childhood cancer is a silent epidemic; people have no idea how big of an issue it is in our state unless they’re exposed to it personally through a family member, friend or coworker," he said. "Cancer is terrible at any age but when it’s a child…oftentimes the chemo, the radiation the treatment, take a longer toll. Even if you beat cancer, you’re going to have other issues throughout your survivorship. The fight isn’t over just because you’re cancer-free; it’s a lifelong battle."
Northwestern Mutual’s involvement began with corporate sponsorship of Alex’s Lemonade Stand Foundation, the leading national childhood cancer nonprofit. Krings has seen cancer strike adults in his family and seen families like high-school pal Brent Gehring’s cope with cancer in a child. His interest was also sharpened as he served on the board of Angels Among Us, a Nebraska nonprofit that provides financial support to families who have a child battling cancer. So Krings wanted to find out more about cancer in children and how Nebraska compared to the rest of the nation.
"On a local level, we started researching how big of a problem it was and what was happening with childhood cancer for the state of Nebraska," he said. "The more research we did, the more alarmed we were when we realized Nebraska led the country in mortality rate and that we were ranked fifth nationally in childhood cancer rates for under age 15."
Through a host of events and activities, "Northwestern Mutual has raised $350,000, contributed 4,000 volunteer hours and hosted more than 50 events in the state of Nebraska," he said.
Rallying around a single cause helps a company concentrate efforts and see results, Krings added. "It’s more than just writing a check. I would ask other businesses, ‘Are you doing as much as you can do? Have you rallied around a couple of causes to make a bigger impact?’ We chose childhood cancer for our one big focus for the state, and we’ve really moved mountains in a short period of time."
Grassroots and word-of-mouth
Tim Harrison, founder and CEO of Harrison Financial Services (HFS), said it’s not just massive corporations that make a difference. His team of 15 has embraced the cause; some events that support cancer charities are part of the larger Northwestern Mutual effort and others are independently coordinated. Year-round activities range from participating in golf tournaments and walks/runs to direct fundraising, but participants never forget who they’re helping.
"Cancer impacts all of us on almost a daily basis because we all know people who are struggling," said Jack McKeegan, advisor and director of investments with HFS. The people of HFS have also seen up-close how childhood cancer affects families, he added. It helps sustains their motivation to support the cause through various reputable cancer nonprofits, whether they fund research or direct assistance to families.
"Three of our clients have had children with leukemia…You want to help parents whose shoes you’d never want to walk in," McKeegan said. "We’re involved in a number of organizations fighting childhood cancer."
"It fits into our larger essential purpose statement; it’s to help people create a better plan for their life, legacy and community," Harrison said. "It’s easy to get people rallied around one thing we want to accomplish and think we can make an impact on. Nobody wants to see kids suffer; it’s one thing everyone will agree on."
Midwestern humility aside, business leaders and employees need to be willing to serve as an example and actively encourage others to step up, too, Harrison said. Whatever the cause, giving begets giving.
"It’s important that people not only do it themselves, but tell other people," he explained. "If I’m not talking about it and inspiring other people to also do things like this, than who is? We owe it to others to be thinking about these things because the reality is, how else did I get involved? How else did other people get involved? It’s through grassroots and word-of-mouth."
Making it better
"People will say, ‘Can I really make a difference?’" Krings said. "The answer is, absolutely you can."
Families like the Gehrings will agree. Despite the rigors of treatment, Emma is first and foremost a little girl, and she wants the same things as any other 6-year-old. She’s into everything pink, Disney princesses, American Girl dolls, and making pretend meals with her play kitchen. She likes art activities in school and iPad learning apps. One of her most exciting experiences ever was meeting Minnie Mouse and Doc McStuffins on a Make-A-Wish trip to Disney World in Florida. "I danced!" she said.
To help Emma keep dancing, the effort to support research and families like hers must continue.
"We want to fight for everybody," Brent Gehring said.
"Our biggest hope is just to make it better for our kids," Kathryn Gehring said.
For more information on childhood cancer charities which support advocacy, research or families, visit nebc3.com/support-the-cause.
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"I call it ‘badass’ because it just looks badass…It’s very versatile and fast and cool."You want to help parents whose shoes you’d never want to walk in."
~ Jack McKeegan, Harrison Financial Services